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Comment by Jen on February 7, 2015 at 2:54pm

Norfolk,

I see many women with receding hairlines. I am not sure if they know about FFA or if just put it down to aging. I also see lots of women with fabulous hair. I now believe  that these are wigs. During a TV interview from Malaysia at the time of the second plane disappearance, I saw a woman being interviewed whose hairline was extremely far back bit she was confident and comfortable while she talked on the TV.

Comment by Jen on February 7, 2015 at 2:47pm

Hi Norfolk, Sometime in 2010, I lost the outer sides of my eyebrows. Then they grew back. In Dec 31, 2010, I was getting dressed to go out and I noticed that my hair was not looking normal but I ignored it since I was rushing. During 2010, my hairline was progressively looking different but I did not pay much attention. I was caregiving for my husband who was dying of cancer so there was not much time to worry about how I looked. Two months after he passed, I noticed the first round spot on my hairline. There was no way to miss this one. This happened in Nov 2011. I thought it would grow back because in the early 90's, I had alopecia spots which grew back in. However after waiting months, it stayed the same and I went to a derm who immediately diagnosed FFA and injected the hairline. Within a few days, I lost the whole hairline 1" to1.5". I was devastated.  I stopped all treatments myself since I did not think it was working and there were dents in my head. I am now thinning all over but I am lucky to have very curly coily hair that hides well.  My have lost about 75% of my eyebrows. I try to draw them back in carefully using pencil then powder and primer. It looks good unless someone's eyes are extremely sharp. I am counting on the fact that people in my age group (50's) do not see well anyway and young people do not spare a glance at me anyhow. lol. I was really upset at first but I do not worry so much about it. As long as I can figure out a remedy (eye pencil, eyeshadow, etc and possibly wigs or hairpieces) I do not spend time thinking. I am scared of the big stuff.

Comment by Norfolk Girl on February 7, 2015 at 1:34pm

Hi there Jen and Purplemainst. Do you know roughly how long you have had FFA? I was diagnosed in June 2012 but think I started losing my eyebrows in about 2008. Had lost about an inch of my hairline by the time I was diagnosed but it was having a 'rest'. It started again last summer but trying to slow it down with topical steroid cream prescribed by Dr Farrant.

Comment by Jen on February 7, 2015 at 1:15pm

Purplemainst,

I saw your message on my emails but I could not find it on this wall. I too am now losing hair not just on the hairline but everywhere on my head. Luckily my hair is very coily and so it is not that easy to notice. I use black eye shadow wherever the spots are noticeable.  I  cannot hide the hairline at all. I know that eventually I will need a wig. I too am trying to move on with my life.

Comment by DragonandFox on February 2, 2015 at 3:04pm

Thank you all for sharing your stories and experiences. Does anyone else feel tired a lot? Auto Immune diseases are never just one thing. Couldn't make it to acupuncture today since it doesn't stop snowing. Hoping my husband can find our house when he returns home from work later tonight.

Comment by Jen on February 2, 2015 at 12:49pm

Dragon Fox, I am so sorry about your nephew and your diagnosis. Losing someone so close and especially to suicide is very difficult.  No one knows what pressures people are under. I am still grieving the loss of my husband three years ago and found out last Friday that my baby sister has early onset of Alzheimer's. She is 50. I discovered my FFA 2 months after my husband died of cancer but I think it may have been there since the previous year but due to caregiving, I never had the time to look closely in the mirror. I remember glancing in the mirror while getting dressed before he passed and thinking that I look different but could not quite put my finger on the problem. The round spots started after he died, then I ran to the doctor. I have to try and make sure that I pace myself so my sister's situation does not cause me to have another big shed.

Comment by Lo on February 2, 2015 at 12:30pm

Dragon Fox:  First, I am sorry for your loss.  May your heart heal in time...

My diagnosis, too, came last Friday.  It was a huge blow... I knew in my head and heart that is what it was, but to hear the words - not easy.  I start my injections this Friday.  I just wish that I knew if the injections and Plaquenil really do make a difference in the rate of loss - or even halting it temporarily.  I feel like I read a lot of posts on here, and the treatments were to little avail.  Has anybody had good success with the shots/medicine?  I have been losing hair for 4.5 years now... and wish I'd started this process sooner... maybe it would have made a difference in the progress.  Who knows.  Mine started above my ears (well, my eyebrows went first, and leg hair)... and progressed a bit up towards my temples... now I know it is "active" again... and it is starting on my forehead.  I can still get away with my "own" hair... I wonder how many of us women out there are still able to do this... It would be nice to see that.  

Ellen:  I love that picture that you sent.  Great haircut... I'll bet yours looks fabulous.  

Lynn: Funny (or not) that you mention the itching.  My scalp isn't itchy (although it does burn), however my skin is very itchy.  I am on prednisone because it got so bad.  The derm says it is "winter itch" or eczema... but I get these tiny red bumps that sometimes cluster, other times are just singular - but my goodness to they pack a punch when it comes to itching.  I don't know if it is related... but it seems they are running parallel.  

Comment by Anne Louise on February 2, 2015 at 11:34am

Dragon & Fox I'm so sorry for your loss. I had a family member die by suicide years ago and the nature of the death made it doubly devastating...that helpless feeling that somehow you could have prevented it.

Regarding the injections, my dermatologist told me the Clobetasol spray is just as, if not more, effective than the injections. I was diagnosed a year ago and have been using Clobetasol nightly since diagnosis. It seems to help with the occasional redness but I fortunately have not had much itching or irritation with FFA. My hair loss has been extremely slow; my hair stylist continues to tell me she notices no changes, but I do see subtle ones. So perhaps you could ask about switching to steroid topical instead of steroid injections.

Recently there was a thread here about dry eye, which a lot of us suffer from. I wanted to share that I had read flaxseed can help with this so I decided to give it a try. I put 2 tablespoons milled flaxseed (looks like brown powder) in my oatmeal every morning for the past two weeks and I find I am using my wetting drops less frequently. It is a simple change to my dietary routine, so why not? I also continue to drink green tea, take a daily probiotic and have recently added fish oil to my regimen. I eat fairly well, but the idea of restricting things like gluten is just too overwhelming for me, so I find adding good nutrients has been a good way to go for me.

Now that I've been living with this for a year, I'm a bit more adjusted to FFA and I don't feel as devastated as I did in those early months. I have been pretty open about my disease with family and friends, but I don't discuss it much with them anymore. They just can't relate. Thankfully, the ladies here in this wonderful group can!

Comment by ElleMN, USA on February 2, 2015 at 10:36am

Dragon&Fox, I'm sorry to read your story but you have found a great support system here to help you get through this.

To Lo: I'm too camera shy to drop a picture of myself here but here is a picture of the general idea. The long pixie that I have is similar in that it combs forward (we joked about how this is like a comb-over for my FFA :) from the side and the bangs swope over my forehead. I'm really liking how easy it is to maintain. And I'm not focused on my forehead so much.MJ, I have the same scaling but little to no itching or redness; but the presence of the scaling is how they know the FFA is still active. After forgoing steroid shots for 18 months I started getting them again in Nov 2014 and have noticed little hairs growing at the hairline. As far as the scarred forehead skin, my dermatologist has recommended trying to build the collagen there to plump it up but RetinA is too harsh for me. I know there are other weaker drugs but I haven't tried them yet. I am planning on it though.

Comment by Maddy, California, U.S. on February 2, 2015 at 12:39am

Hi Dragon & Fox, Wow. I can really relate to a lot of what you said. I too experienced my greatest stress and grief (the illness and loss of my mother and best friend) a few months before my FFA really kicked in. I am so sorry that you are going through such grief. It is a sad and lonely place. I am glad you posted and are here. I went through months of the steroid injections, and yes, OUCH, they are horribly painful. One time my derm did about 20 and my head was bleeding after she was done. I think they are worth a shot. I did them for 6 months and really did not notice any difference (but I am not discouraging you because I know some people on here say they work!). I found, for me, that the liquid that I put on 2-3 times per week worked just as well, so I stopped the shots. My eyelashes also started thinning horribly and then my brows a year or so later. I do not know if it's related to FFA, but it seemed to be a precursor for me and the onset of my FFA. I started using Latisse (bimatoprost ophthalmic solution) almost immediately and my eyelashes grew back and most of my brows. I still use it every night. I get a prescription from my derm and buy through Canada since it is so expensive here in the U.S. I also understand feeling demoralized. I went through feeling very sorry for myself and a horrible depression about it all. I guess what I can say is that it does eventually get better. Anyway, I wish you all the best. I hope the acupuncture helps...and again, I am so sorry for your loss. 

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